The healthcare needs and general practice utilization of people with acquired neurological disability and complex needs: A scoping review

Abstract Background For people with acquired neurological disabilities and complex needs, general practitioners (GPs) play an important role in health management and early intervention for the prevention of comorbidities and health complications. People with disability are a vulnerable group who need and have the right to, quality general practice services. It is therefore important to understand the health needs and service use of this group. The aim of this review was to identify the healthcare needs and general practice utilization of people with acquired neurological disabilities and complex needs. Methods A scoping review methodological framework was utilized. Six databases (MEDLINE, PsycInfo, CINAHL, Scopus, Embase and the Cochrane Library) were searched. Articles were included if they reported on general practice service utilization of people with acquired neurological disabilities and complex needs aged between 18 and 65. Articles were required to be peer‐reviewed, written in English and published between 2010 and 2021. Results Thirty‐one articles were included in the review. Studies originated from Canada (9), the United States (8), Australia (4), Switzerland (4), the United Kingdom (2), England (1), Norway (1), France (1) and Denmark (1). For many people, GPs were the main healthcare provider. People with disability consult multiple healthcare providers and navigate complex healthcare systems. Commonly presented healthcare needs were bladder, bowel and skin problems, pain and chronic pain, medication needs and mental health concerns. Conclusions People with acquired neurological disabilities and complex needs were vulnerable to receiving suboptimal healthcare. The literature highlighted issues regarding the accessibility of services, the fragmentation of health services and inadequate preventative care. GPs were challenged to offer adequate disability‐related expertise and to meet the mental health needs of people with disability within time constraints. Patient and Public Involvement This manuscript was prepared in collaboration with a GP, who is one of the authors. A person with lived experience of acquired neurological disability was engaged to check the alignment of the findings with their personal experience and provide feedback.


| INTRODUCTION
People who have acquired neurological disabilities and complex needs have distinct healthcare needs and tend to experience increased health challenges and social vulnerability compared to the general population. 1,2 Acquiring a neurological disability and complex needs often occurs as a result of acquired brain injury (ABI) (including stroke), spinal cord injury (SCI), multiple sclerosis (MS) or cerebral palsy (CP). Such individuals share similar disability trajectories and experience profound functional impairment which results in interrelated needs. 3 The breadth and severity of these needs coincide with increased health challenges and impacts life beyond the management of disease and symptoms 2 resulting in a need for support in one or more life domains (e.g., mobility, self-care, domestic life and/or self-management) 4 and potentially, comprehensive lifelong healthcare to support and maintain health and well-being. 5 Secondary morbidities such as chronic pain, bladder and bowel dysfunction, respiratory conditions and pressure ulcers often eventuate. 6,7 Additionally, health risk factors such as smoking, obesity and inactivity are substantially higher for this group compared to the general population. 1 These issues often fall to primary care for initial management. [7][8][9] Although primary care can involve several service providers (e.g., medical and allied health), encounters with general practitioners (GPs) are particularly important given their role as coordinators between patients and multiple healthcare providers. 8,10 However, the literature suggests that healthcare provided by GPs falls short of best-practice care. 7,11 For people with acquired neurological disabilities and complex needs, early intervention and management of their conditions are particularly important as they can prevent the development of comorbidities and complications. 8 High-quality care provided by GPs has the potential to avoid unnecessary hospitalizations and improve health outcomes, individual function and well-being over time. 10 GPs focus on the holistic view of the patient, with a focus on prevention 12 and understanding the whole patient. 13 However, there are many constraints to service provision, including funding structure, time and persistence of the biomedical model. 14,15 Internationally, there has been an increase in GPs working as a part of multidisciplinary healthcare teams, on the assumption that interdisciplinary teams deliver higher quality services to patients. [16][17][18] In the Australian context, GPs are increasingly part of a general practice care-based team (with practice nurses) and are funded to support team-based care. 19 Similar team-based models of care are implemented internationally, including in the United Kingdom, the Netherlands, the United States, Canada, Sweden, Spain and South Africa. 20,21 Despite the increased health needs of people with disability, evidence suggests that general practice does not serve people with complex disabilities as well as other patients. 22 Challenges include insufficient building access or equipment, long waits for appointments and a lack of assistance with healthcare activities. 23 Although higher levels of preventable health risk factors are evident for people with disability, studies have shown that people with disabilities are less likely to receive preventative care through GP services. 24 Consequently, people with disability tend to use the emergency department more than their peers and often experience higher levels of unmet health needs. 11,22,23 Given their increased health concerns and the importance of GP services for people with disability, it is important to understand the health needs and service use of this group.
The literature investigating health needs and healthcare service utilization of individuals with a disability is dominated by research specific to people with physical 25 or intellectual disabilities. [26][27][28] Substantially, fewer studies focus on individuals with acquired disabilities such as ABI, SCI, MS or CP. Of the limited research available, Dismuke et al. 29 conducted a systematic review to examine health service utilization and cost in individuals with traumatic brain injury (TBI). Their findings revealed significant variation in healthcare costs and service utilization depending on the population and severity of TBI, with significant racial disparities in service utilization and access to primary care. McColl et al. 7 identified common healthcare needs in their scoping review on primary care for people with SCI. Commonly raised issues in primary care included secondary complications such as bowel or bladder dysfunction and pain. The review also found significant OLIVER ET AL. | 2727 unmet needs among people with SCI, including the need for information and specialized expertise. Most individuals with SCI reported being satisfied with the quality and accessibility of primary care; however, healthcare users had commonly developed complex strategies to navigate healthcare systems and services. 7 The health needs and service utilization specific to general practice by people with acquired neurological disabilities and complex needs remain unclear.
People with acquired neurological disabilities and complex needs are a vulnerable group in need of reliable access to quality GP services over time. The increased and variable health concerns experienced by this cohort highlight the importance of maximizing the effectiveness of GP services for this group. Understanding the health needs of this cohort and their experiences with GP services can inform practice, policy, planning and funding and contribute to higher-quality care. This scoping review sought to identify the healthcare needs and general practice utilization of people with acquired disabilities.

| METHODS
The review utilized the scoping review methodological framework mapped by Arksey and O'Malley, 30 combined with recent method enhancements. 31,32 This framework was deemed appropriate as the topic is large, and a scoping review offers a broader perspective regarding the topic of interest than a systematic review. The Prisma Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation informed the reporting of the method, study selection and results. 33

| Stage 1: Identifying the research question
The original objective of the review was to understand more about the current status of health issues faced by people with acquired neurological disabilities and complex needs, the primary care services available to this group, and whether services are utilized. However, it became apparent early during the screening that the literature spanning primary care was diverse and inconsistent due to international differences in terminology and healthcare systems. Due to these inconsistencies, and because the authors were primarily interested in understanding the health issues presented at general practice services for this group, a more specific question was developed: 'What are the service and access needs regarding the general practice of people with acquired neurological disability and complex needs?' For the purpose of this review, 'people with acquired neurological disability and complex needs' referred to people with acquired neurological disability and complex needs as the result of an ABI (including stroke), SCI, MS or CP. The search strategy was developed by the research team, including   content experts, in collaboration with an experienced research   librarian (see Supporting Information: Appendix A: Search strategy   table). Because the initial review aimed to identify the healthcare needs and primary care utilization more generally (e.g., allied health and community services), the search strategy included three broad concept headings: (1) population, (2) primary healthcare (including healthcare needs) and (3)

| Stage 3: Study selection
Following the inclusion criteria (see Supporting Information: Appendix B), a selection of 300 titles were double-blind screened by three reviewers demonstrating 97% interrater agreement. Discussion to resolve conflicts occurred at each stage of screening. The remaining titles and abstracts were double-blind screened by at least two of the primary reviewers. All study designs with extractable primary data were eligible for inclusion in the review (e.g., qualitative, quantitative, mixed-methods, cross-sectional, longitudinal). During the initial fulltext screening, consistency of terminology was identified as an issue across articles. Therefore, in line with the primary aim of the review, an additional exclusion criterion that outlined general practice services was developed. Specifically, if articles did not state that a provider of care services was a GP, Family Physician, Primary Care Physician, a Physician in a GPs office, Practice Nurse or Nurse Practitioner or if the setting or healthcare provider was not adequately described, they were excluded. Therefore, articles were included if the setting or healthcare provider was adequately described, and the reviewers could determine whether healthcare occurred at general practice. Additionally, an exclusion criterion for study design was required to ensure that reported study findings were specific to the population of interest (i.e., people with acquired neurological disability aged 18-65 years) and reported on general practice care in isolation from other types of care (e.g., secondary care). Articles were therefore excluded if results regarding general practice needs or utilization were unable to be isolated from other types of care (see Supporting Information: Appendix B: Exclusion criteria development, for a summary).
A total of 69,791 citations were initially retrieved. Covidence was utilized to remove 11,656 duplicates. The remaining 58,136 titles and abstracts were screened by three independent reviewers to determine the need for further evaluation of the full-text article.
After the full-text screening of 449 articles, using the revised exclusion criteria, an additional 419 articles were excluded. One article was identified from forwards and backwards citation searches of the remaining 30 articles. Data were extracted from the final 31 articles. See Figure 1 for the full search process diagram. 34 2.4 | Stage 4: Charting the data Data extraction was an iterative process conducted by the three primary reviewers and checked by co-authors. Characteristics of included studies were extracted from 31 eligible articles to describe the population, setting, study design type and methods. Data were also extracted according to predetermined categories to summarize outcomes, results and findings in relation to the review question.
Specifically, data relating to the utilization of (including access to) services, and the health needs presented at general practice services, were extracted. Where authors identified and reported gaps in the literature and research implications, the review authors charted this also. A narrative synthesis was conducted to collate the key information from the included articles. 30 Keeping with the typical intent of a scoping review, the aim of this review was to provide a descriptive overview of the evidence in relation to the review question. In addition, due to the broad topic, a diverse range of research methodologies and data analysis techniques covered by the review (e.g., qualitative, quantitative, mixed-methods, cross-sectional, longitudinal), no quality appraisal of the included studies was performed. 31,32

| Stage 5: Collating, summarizing and reporting results
The PRISMA-ScR checklist guided the collating, summarizing and reporting of results. 33 Key study and participant characteristics, as well as the main findings relating to the review question, are reported in Table 1

| Stage 6: Lived experience consultation
After the results had been collated and summarized, a person with lived experience of an acquired neurological disability was engaged to check the alignment of the findings with their personal experience. 31 Overall, the consultant's perspective indicated most of the findings were congruent with their experience.
F I G U R E 1 PRISMA flow diagram. Adapted from the PRISMA 2020 flow diagram template for systematic reviews. 32

| Synthesis
The following data synthesis should be considered in the broad context of healthcare systems and sociocultural backgrounds that have influenced the findings of this literature.

| Utilization of general practice services
Findings regarding the frequency of GP use consistently indicated that people with disabilities are more frequent users of GPs compared to the general population, 35,60,62 particularly in the first 1-3 years following discharge from hospital or diagnosis. 37,49,54 Utilization of GP services increased with disability severity or complexity. 36,46,60 Mixed findings regarding age and GP use were evident. Younger age of stroke was associated with high GP use, 41 whereas GP use increased with age in people with SCI and people with MS. 35,54 One study found gender differences regarding service use. Specifically, young men with SCI sought help from GPs at a greater rate than females with SCI and the general population. 35 Interestingly, in a study of people with SCI, Borg et al. 37 found no relationship between the frequency of GP use and self-reported quality of life.
Utilization of GP services differed by disability type. Although people with SCI and TBI used GP services more frequently for 1-3 years postinjury, longer-term service use was significantly different between groups. For people with SCI, the use of GP services remained at an increased level for 9 years postinjury, but for those with TBI, GP service use returned to baseline level at 4 years postinjury. 49 Jones et al. 46 found that people who experienced MS

| Utilization of healthcare providers
Although it was consistently found that people with disability are high users of GP services, mixed findings were apparent regarding participants' main healthcare providers. Multiple studies found that GPs were the main source of healthcare for people with disabilities. [42][43][44]48,55,60 In particular, people with SCI reported visiting GPs more than rehabilitation specialists, wound care nurses or specialists to assist in managing pressure ulcers. 48 GPs were central figures in the management of mental health needs for people with MS due to their continuing close relationships with patients and their ability to manage pharmacological treatments. 55 However, neurologists were also commonly found to be primary healthcare providers for people with MS in the United States, Canada and Switzerland. 36,40,57,58 People with disabilities consistently utilized multiple healthcare providers 36,38,40,42,43,45,46,48,49,57,58,60,61,64 and fragmentation of services was an issue. 38 disability wanted increased continuity of care among healthcare providers, 38,40,55,58 and GPs highlighted that patients often moved between healthcare providers without anyone being primarily responsible for their overall care. 52,53 Compared to those with less severe disabilities, people with complex disabilities more often utilized multiple healthcare providers. 38 Challenges with access to healthcare due to location and transportation issues were also identified. 37 55 highlighted that when people with MS were located close to their GPs and perceived the location as relatively easy to access, the service was highly utilized. Issues related to transportation to GP offices, including no access to, or difficulty accessing suitable transportation, were a concern of GPs in both urban and rural contexts. 52 Financial issues also affected access to GPs. 37,39,42,57,58,62 Medical care costs were the primary barrier to access. 39 Other costs such as transportation, parking fees and accommodation (if required) were also commonly identified as barriers to accessing general practice services. 37,57,58

| Health needs presented at general practice
A limited number of studies reported specifically on the health needs presented by people with acquired neurological disabilities and complex needs at GP offices. 42,44,45,48,56,59 Generally, GP services were sought for acute care needs. 42,52,58 Health needs included bladder, bowel and skin problems, pain or chronic pain, mental health concerns and medication requirements. 42,44,45,48,56,59 Health needs for which care was required, but not received or sought, were bladder problems, bowel problems, chronic pain and medication requirements. 42,59 In a qualitative study, Lofters et al. 51 investigated GPs' comfort level in managing the specific health needs of people with SCI. All GPs reported some level of comfort in treating mental health issues, urinary tract infections and skin concerns, providing immunizations and monitoring blood pressure. However, comfort levels for managing spasticity, respiratory issues and autonomic dysreflexia were low.
GPs were challenged to meet the mental health needs of people with disabilities 44,56,62 and satisfaction with GPs' ability to treat mental health issues was also low. 44,56 Toor et al. 62 found that 40% of women with TBI reported not receiving postinjury care when needed, particularly for emotional or mental health problems, which was significantly more than women without TBI. In a qualitative study, GPs described that due to a complex interplay of mental health and physical well-being in people with MS, doctors often do not view mental health symptoms as distinct conditions that require support. 56 Despite seeing high levels of depression and anxiety and playing a central role in the management of mental health, GPs described resisting pathologizing symptoms of low mood and utilizing social explanations of depression onset and maintenance (e.g., relationship breakdowns or the stigma attached to physical symptoms such as incontinence). 56 Interestingly, in a comparison of health services, Zhou et al. 63 found that the use of GP services demonstrated the greatest reduction in disability-related distress for people with a head injury, stroke or brain damage (44%), people with a physical disability (28%) and for people with sight, hearing and speech disability (12%). 63 These findings indicate that GPs in the primary healthcare setting occupy an important place in dealing with disability-related stressors and psychological distress.

| Quality of care provided at general practice
Through documenting healthcare needs and general practice utilization, factors that influence quality care in general practice were identified. The quality of care provided by GPs was a common issue raised. 44,48,52,59,61,64 People with more complex and severe disabilities were consistently less likely to receive comprehensive care 44,48,52,59,61 and were less satisfied with the quality of care received from GPs. 44 However, several studies found people with acquired neurological disability and complex needs were satisfied with the quality of care received from GPs, 45 The frequency and quality of preventative care provided by GPs were often reported as suboptimal. Numerous studies found that people with acquired neurological disabilities and complex needs received decreased access to preventive care, including low rates of cancer screening, influenza vaccinations and bone mineral density testing. 24,51,52,58 Preventive care was more frequently administered for simple procedures such as influenza and pneumococcal vaccinations, than for more complex preventive care screenings that require preparation or special equipment (such as for colorectal, cervical and breast cancer screening) when administered for wheelchair users or people with SCI. 61,64 Reasons for not receiving preventive care were lack of physician recommendation or GP practices located in inaccessible buildings. 64 However, one study found that women with TBI were not disadvantaged compared with the general population with respect to breast and cervical cancer screening. 39 Knowledge of disability-related complications was also highlighted as an issue. 40 40,44,47,52,53,57,61,64 factors all influence quality care in general practice. Figure 2 also presents the recommendations for practice derived from the results of this scoping review.
Healthcare system factors that were found to contribute positively to quality care in general practice included continuity of care, initiation of preventive healthcare practices and having adequate time for consults. For people with acquired neurological disabilities, coordination of healthcare is often complex and left to the individual. 38,40,52,53,55,58 In addition, people with acquired neurological disabilities and complex needs commonly utilize multiple healthcare providers alongside general practice services. 36,38,40,42,43,45,46,48,49,57,58,60,61,64 This fragmentation of services and lack of continuity challenges the provision of quality care for people with acquired neurological disabilities and, in some cases, contributed to their negative health outcomes. 38,40,52,53,55,57 Policy and practice responses around the world are being developed to assist patient access to quality multidisciplinary team-based primary care. 65  are also inadequate to achieve equal access. 69 Furthermore, a recent environmental scan of the accessibility legalization, standards and guidelines across Canada found that accessibility varied throughout the country due to diverse standards and guidelines in different jurisdictions. 70 Hence, physical accessibility may remain an issue in some countries due to standards not being adopted (e.g., voluntary standards rather than legally required standards) or implemented correctly, lack of monitoring and enforcement (i.e., due to no governing body), or standards not adequately meeting the needs of people with acquired neurological disability and complex needs.
The cost of general practice services and financial restrictions also negatively impact access to GPs. 37 there are limitations with respect to the specific application to a single disability group. The literature included in this review largely reflects studies involving adults and therefore findings may not be applicable to youth or elderly patients. Care should be taken in interpreting findings, as the included studies are drawn from a wide range of settings, each with their own sociocultural setting, health system and funding scheme and a range of demographics (e.g., socioeconomic status, education status and cultural and ethnic backgrounds). Additionally, findings regarding broader healthcare utilization need to be considered within the scope of the included articles which was limited to those reporting general practice service use.
The possibility that all relevant articles may not have been captured through the search strategy is also a risk of any scoping review. Extensive preliminary searches were conducted; however, as the initial review aim was to identify healthcare needs and primary care utilization more generally the final search strategy did not include the terms 'General Practice' or 'Family Physician'. The search captured general practice services under the broad concept headings of primary healthcare (including healthcare needs) and utilization (e.g., of primary healthcare services). Although refinement of review questions is expected in scoping reviews, 31 it is possible some articles were not captured by the broad search strategy.

| CONCLUSION
This review has highlighted that people with acquired neurological disabilities and complex needs are vulnerable to suboptimal healthcare in general practice. Key factors and implications for practice have been outlined. Findings suggest that high-quality healthcare for people with acquired neurological disabilities and complex needs requires collaborative relationships and continuity of care across healthcare providers. In addition, evidence suggests the general practice workforce would benefit from further knowledge of disability-related complications, including mental health concerns.
Ongoing policy developments to support multidisciplinary teambased care are required. Improving the health outcomes of people with acquired disabilities requires that primary health networks have an evidence base to better understand the specific health needs of people with disability and how to meet them. Local solutions are best considered within a co-design framework that includes GPs and people with disabilities.

AUTHOR CONTRIBUTIONS
Stacey Oliver, the primary review author, contributed to methodo-